I had a clinic appointment last week that I've been a bit reluctant to post about. Partially because I'm disappointed with myself, and partially because sometimes I can't help but feel like I'm just being so damn dramatic. Before I talk about last week's appointment, let me back up a little. When I was discharged on November 25, my FEV1 was 54%. I was terrified at the thought of going home with such low lung function (for me). Before I was sent home there was a debate over whether or not I should stay a while longer and, surprisingly, I was the one arguing to stay. But, because of the Thanksgiving holiday nobody would be around for me to do pulmonary rehab for 4 days and my doctor believed that I could make more progress at home rather than cooped up in a tiny hospital room. Also, it was a well known fact that the lack of sleep coupled with the seperation from my nursing baby had turned me into an emotional and hormonal monstrosity and I think they were getting tired of the phlebotomists leaving my room in tears.
At home, I continued to do 3-4 treatments a day and took my medications religiously. When I went back for my discharge follow-up two weeks later I was at 67%. I was happy (well, happier) with this number and felt pretty optimistic that I was on my way back up. But just a few days later I started to get a runny nose. Soon it turned into a full blown head cold which, for me, always means a pretty good cough is in the works.
(Something related: I've always struggled with sinus problems. By the time I was 10 I'd been through 3 pretty major sinus surgeries. SO OFTEN a simple cold that starts in my sinuses becomes a lung infection. We know this is a problem and have recently talked about the possibility of another surgery.)
For the last month I've done my treatments, exercised and taken my vitamins like I should, but I just can't seem to get back up to par. I think a lot of it is due to the ample amount of stress in my life right now. Add to that the fact that I've always had immune system deficiencies, I work with the public on a daily basis and I have a 5 month old who so generously shares all the germs she picks up in day care. Is it any wonder I spend half my life feeling ill? When I went to clinic last week I blew a 59. Now here's where I feel like I'm being dramatic. I know that for some people 59% is awesome. But for me, someone who has spent the majority of my life between 85-95%, 59 is devastating.
The good news is that nobody feels this is a permanent downward trend or that I will have to accept a new, significantly lower baseline. The entire CF team is very optimistic that I will be able to get my scores back up. The consensus seems to be that I'm still unstable from getting so sick so fast and, after all, it is still cold and flu season. I'll be starting some new meds: azithromycin daily and Tobi on alternating months. I was also given some sinus rinses that are an absolute godsend. I've never used any antibiotic chronically, so I'm hoping this will be quite a shock to my system and that it will give my body the jump start it so badly needs right now.
(Another tangent: I used to regularly argue with my doctors about chronic medication. The first time I went to the adult center at the U of U, I was sitting at 97%. They were impressed with those numbers, but wanted me to start doing Tobi "just to mix things up"... seriously, that's what they said. I was strongly opposed to that idea. I understand now that a lot of CF treatment is prevention, but my thinking used to be why risk over utilizing any medication when I'm doing so well? If and when I need it down the road, what are the chances that the bugs will be immune from me using something when it maybe wasn't necessary? At that very first appointment I ended up telling the doctor that she could write the prescription if that would make her happy, but there was no guarantee I'd ever fill it. I think I left somewhat of a brazen first impression.)
So here I sit, anxioulsy awaiting the arrival of my meds. For the first time I'm being absolutley compliant with my doctors, and it's actually a good feeling.